1 little bird wants to stop meds

[zach]

https://www.youtube.com/watch?v=zaGUr6wzyT8

ok... a little bird needs some good information, and i may not be most qualified to provide the best answer

so this bird... fairly recently infected and diagnosed... has great lab numbers... but hates to take meds, various emotional obstacles and some side effects... bird also has some other health issues unrelated to hiv, but taxing on the body nevertheless. bird is more adherent to the meds for those conditions. (no stigma or side effects)

this bird keeps missing random doses of hiv meds, sometimes a couple days at a time... and sometimes even, a week or more.

obviously this little bird isn't quite emotionally prepared to make the full commitment to medication that adherence requires, bird understands this.

in order to avoid building resistance issues from the repeated missed doses... would it be better for the bird to cold stop taking meds? until such time as lab numbers demand action, and the bird is better prepared to cope with the rigorous schedule and pill load...

or, does bird need to wake up to the new reality? take the pills daily, come rain or shine, good or bad. and if side effects are bothering bird, to be open and honest with the doctor, in order to work on dialing in a new regimen of meds?

i thank you for your input

  jah! one love, irie

[AusShep]

The dosing you're describing is what leads to resistance.  Someone else may be able to provide more insight on drug and class resistance with knowledge of the actual meds. 

There are also theories that low level resistance can build up with missed doses and eventually lead to treatment failure, even with good numbers and future good adhearance. 

Bite the bullet, get a pill organizer, and stick to all meds, not just the non-HIV ones.  There is no reason side effects need to be an issue with the options likely available.

[Joe K]

Hey Zach,

The little bird needs to talk with his doctor and decide on a course of action.  It's obvious he isn't taking his meds properly and if he can't get his act together, he would be better off stopping them and restarting at a later time.  Drug resistance is a hard task master and if he loses access to full classes of drugs, he could be in serious trouble in the future.

The little bird also needs some counseling, to understand why he can't accept that he is poz and that taking the meds is an affirmative action.  He may need to understand why he worries so much about what other people think about him.  He certainly needs to understand how to forgive himself for being poz.

Taking meds for the rest of your life can be daunting, but as with most things in life, perspective is everything.

He sees HIV as something undesirable, ergo he is undesirable and is open to scorn and rejection.  In some ways, he has become HIV, in his own mind and he cannot separate the virus from his self.

Help the little bird adjust to his status and forgive himself for whatever role he may have played in becoming poz and the little bird will stop beating himself up... over something that simply cannot be changed.  Once the little bird can do this, taking care of his HIV will become second nature to him, as he will remember that he matters and most important, that he wants to live.

Joe

[mecch]

Hey Zach, The little bird needs to talk with his doctor and decide on a course of action.

This.

No doctors here, I think. Even if there were, certainly not the bird's doctor.

Good suggestions all around. But.

But the basic rule for all HIV+ people is to see doc, be honest with doc. 

If a patient has a challenge or doubt following doc's treatment plan, then communicating honestly the doc's plan to friends and knowledgeable support people.  Who might help explain the whys and hows of following doc's plan.

I haven't thought much about the ethics of what friends and families can do when someone doesn't follow doctor's orders. It seems like a complicated overwhelming situation for the friends/family.  It the patient won't communicate honestly, or simply won't follow treatment, then maybe the only hope and help can come from someone really really really close to the patient who can sort fact from fiction, and who might also have a tie line to the treating doctor.  Maybe. Because finally others are useless when a patient is unwilling.

I think finally all a friend can say, ethically, is "please follow doctors orders".  And then let the chips fall where they may.

 

[mecch]

I haven't known anyone to refuse treatment before a terminal stage. For any chronic or potentially lethal disease. 

I have experienced a few loved ones in terminal stage decide when enough is enough.

But what of a healthy person who won't take treatment to treat something treatable? I dunno.

I can maybe suggest a comparison to addiction but its not exactly the same. I know smokers and drug addicts who continue after doctors says to stop.  Some enjoyed the drugs or booze until well into the terminal stage. Others were miserable about continuing, but continued because... addiction.  This isn't really the same as not taking medicine for a chronic condition.

Seems like someone needs a will to live and if there is no will, then the doctor can do so much. One would need spiritual guidance or pyschological therapy to rebuild or recognise the will, I suppose. 

[zach]

https://www.youtube.com/watch?v=Tg97JiBn1kE

wanna thank all three of you... collectively you've echoed pretty much exactly what i've been saying

i've cut portions of each of your posts, things i think bear repeating again... in case the bird is reading 

cut the crap bird, time to fight this... far better to fight the virus, that fight the disease...

we can't convince you to take your meds. you'll probably be ok for awhile, but the time will come, it is inevitable... sooner or later, you will have to fight

The dosing you're describing is what leads to resistance.... Bite the bullet, get a pill organizer, and stick to all meds, not just the non-HIV ones.

The little bird needs to talk with his doctor and decide on a course of action... and if he loses access to full classes of drugs, he could be in serious trouble in the future.

The little bird also needs some counseling... forgive himself for being poz.

he wants to live.

But the basic rule for all HIV+ people is to see doc, be honest with doc. 

Because finally others are useless when a patient is unwilling.

[zach]

to the question... please help me out here yall, I AM NOT A DOCTOR!!!

What is a whole class of meds?

Truvada NRTI, a nucleoside reverse transcriptase inhibitor

Norvir PI, protease inhibitor

Prezista PI

No doctors here, I think.

But the basic rule for all HIV+ people is to see doc, be honest with doc. 

Because finally others are useless when a patient is unwilling.

I think finally all a friend can say, ethically, is "please follow doctors orders".  And then let the chips fall where they may.

Time to cut it out bird, seriously, step up

All a friend can say is ain't it a shame... Jerry Garcia

[zach]

fuck it you're done?! you are asking me questions i'm not qualified to answer, i asked you to pose them to the group, you asked me to do it... i did

pretty unfair of you to put me in this position, what sort of responsibility do you think i'll feel... guilt that maybe i could have handled this differently

still sore at you for the way you did me when you went on that cruise, make no mistake about that

your health, your choice... your consequences

[initforlife]

Wow what a rough night I had last night. to much thinking made my head hurt. I had to look deep inside me for the answers . Not an easy task. life is what you make it sure we are handed shitty cards at times but that doesn't mean give up walk away means play the game and do the best you can. People who judge would like nothing better then for you to go away and the truth be hidden so they don't have to deal.   I will live despite it all and do what ever it takes even taking my  meds. people died  before me so I could have meds and live how selfish of me not to take my pills. anyway with lots of help and friends I know I can do this.... here is my post on my facebook today ..........               I will live and not feel ashamed anymore! I will teach people who truly don't understand about certain illness's Shame on anyone who judges!..Talk behind my back do whatever makes you feel good about yourself's know the facts before you speak

[Jeff G]

Wow ... what a turn around . We will support you every step of the way. If you want your privacy respected then you need not tell your business but when your secrets become more important than your health its time to reevaluate . I think its great that you are working towards letting the fear of people finding out you have HIV hold you back from a great life .
It does not mean you have to tell the world you have have HIV but it can mean the world wont end if you did .

[zach]

init, i'm not, and never was, campaigning for you to come out loud and proud as positive, to tell your friends and the world...

you can treat yourself, and still maintain your privacy. the side effects you point to as reason for not taking meds, there are alternatives to mitigate those effects. but you have to be willing and able to discuss with your ID doctor your issues.

i hope your vacation from meds won't impact your labs, i hope you can find some peace with the virus and the medicines that treat it

whether you choose to continue taking meds, or to stop until you've wrapped your head around it better. that is your decision, you're right, your numbers are good enough that you could (and maybe even should) take that time.

but the reckless skipping doses, constant fretting... you give this virus more power than it deserves.

sorry if my last post was harsh... i got called to account on it. to the member that did... you are right

[leatherman]

you can treat yourself, and still maintain your privacy.

^^this
taking meds has absolutely nothing to do with disclosure and you're making it worse conflating the two. This thread, and previous ones, were simply to say, "take your meds the way you're supposed to, or don't take them at all." the wishy-washy, on-the-boat off-the-boat is THE way resistance happens. So if you're going to take meds, taking them willy-nilly is NOT the way - and frequently hurts more than helps.

Now, if you ARE going to take meds, then you simply have to learn to be sneakier, more covert, etc (like simply just not making a big deal out of it) about your meds and when taking your meds. Don't give HIV some sort of super power. Take your pills. IF some rude questioning person would ask, simply 1)lie (name a disease. any disease that you aren't ashamed of - blood pressure, cholesterol etc) , 2) tell them off, 3) or say politely that its none of their business.

people hide all sorts of things in their life from the public and still carry on with the functions and duties that they need to do. Instead of screwing up the meds, find another way through whatever issue you're facing.

[initforlife]

LOL  Thank Y'all you confuse me so much.  kind of like damn it you damn if you don't. but anyway let me explain that was my way of saying fuck you hiv. . That I'm ready to fight with l meds and to live and stop feeling sorry for my self and to go on with life . it is was my of taking a strong stand. although I regret that my family was put in the middle and people are asking tons of questions. Should have warned my girls first. but what is done is done now. I feel better other then this migraine that I have had since the other night. . anyway I'm going to try to take one day at a time and continue to find my old self I know she is still there. and Zach love you always you know that! you have done more then most would do . Thank You!